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Family Forward and Paying It Forward

For those of you who didn’t see my eleventy billion tweets and photos from Family Forward: Orlando Adventure, my family had a really incredible time. There are probably a few dozen posts I could write about our time there, but I have a feeling only two or three will actually get written…and this is the most important one.

Quick blurb about Family Forward:

While Family Forward: Orlando Adventure attendees will be comprised of social media influencers, the focus of the retreat is to strengthen the digital family. Our hands-on workshops and events are centered on making memories and teaching skills families can apply everyday such as communication, creativity, team building, and trust.

Because Universal Orlando Resort was the headline sponsor of this event, we were able to enjoy a lot of really great experiences at a deeply discounted rate compared to what the retail value of the trip would have been. But it still was a hit to our family budget once we added in the cost of airfare from Albany to Orlando and back again, so we really appreciated the extra spending money we received from family for us and for TJ.

Family, Forward!

The Kindness of Strangers

But it wasn’t just family who helped us out. On our first day there, we were walking in the direction of the hotel lobby when we heard a guy behind us calling for us. He may have said, “Hey!” I don’t remember the actual words. What I do remember is that he handed Tom a fistful of dining cards that he and his family had been unable to use up before going home. I admit I had some skepticism at first, but it turned out that it was a genuinely kind gesture! Sure, there was only 1 entree left out of all of the cards this kind man gave us, but there were a number of drinks and snacks we were able to redeem throughout our stay, saving us quite a bit of money while roaming the parks! I am so grateful to this anonymous stranger who allowed us to avoid some stress about whether or not to give into the temptation of churros and Butterbeer.

The Kindness of Friends

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Tyrrells Chips are Jolly Good – A Review

I was given the opportunity to try out Tyrrells English Chips this summer, and I was a bit shocked when the package arrived. I’d been expecting tiny single-serving bags as samples. Instead, I had a full-sized bag of every flavor chip Tyrrells offers. (Thanks, Tyrrells!)

Tyrrells Chips

Our Favorite Flavors of Tyrrells Chips

Each family member seemed to have a different favorite flavor. TJ liked the simple flavor of the Lightly Sea Salted chips, followed by the Mature Cheddar and Chives. I really enjoyed the Sea Salt and Cider Vinegar chips, although the vinegar was a tad subtler than what I generally prefer. (I’d suggest them as a gateway salt & vinegar chip for the non-initiated.) Tom was obsessed with the Sea Salt and Cracked Black Pepper variety, and I left him that bag all to himself. I don’t believe that pepper has any right to be on a potato chip. I also left the Sweet Chili and Red Pepper to Tom. That was about all our immediate family could handle, so we brought the rest of the chips down to my mom’s house one Sunday for our big family cookout. We left the Worcestershire Sauce and Sundried Tomato chips and the Veg Chips for my sister-in-law Meghan and my niece Avery, which they both quite enjoyed.

All of the chips were quite crispy, what you’d expect from buying American kettle chips. As the Tyrrells website says, “We cook our proper English chips by hand in small batches here on our farm in Herefordshire. And we always leave the jackets on. Well it’s only polite.”

Smart Packaging

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We had the delight of attending last year’s Family Forward Retreat by Mom It Forward, and we’re going back for this year’s event! This year, we’ve decided to make it a surprise for TJ. His ninth birthday is the Sunday before we leave, so we’ve been teasing him that we’re not getting him any presents – we’re only giving him a card for his birthday. The card, however, will include a “magic ticket” to Universal Orlando Resort and Loews Portofino Bay Hotel for the retreat. (Disclaimer: The retreat is highly subsidized by the sponsors, making it both affordable and amazing.)

TJ's Magic Ticket

The look on his face is going to be priceless, and we’ll be waiting until we’re among our big extended family for his birthday luncheon so everyone can share in the excitement. We plan on taking a video of the reveal so we can capture the moment forever. Last year, TJ celebrated his birthday during the retreat, and he’s been begging to go back ever since!

This year, I hope to make my way through the park without needing my cane to help me walk, but I know our feet will still suffer in the midst of the fun. We came up with a family motto last year that I hope to bring back this year: “Our feet hurt, but it was worth it!

Family Forward - Feet

And that’s what it’s about. Making memories as a family, overcoming challenges together, and enjoying whatever we encounter during the journey – whether it’s minions, riding the Hogwarts Express, swimming, using earplugs for Blue Man Group, or waiting in line to get something to eat. And maybe, just maybe, getting upgraded to a special Despicable Me suite, for which this post is an entry to win!

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Prejudice vs Tolerance – Skin Color and Economic Class

It’s no secret that I am a rather liberal Democrat. There’s no question of my place well to the left on the political spectrum. I do consider myself a Christian, though the exact definition of my beliefs is rather hazy. I believe in the teachings and philosophy of Jesus Christ, something I refer to as Christian humanism. I am also a theist, meaning I believe in God, but not necessarily the literal depiction of God in the Bible. Explaining that could be a whole other blog post…or a book. But I wanted to present these ideals of mine before getting into the meat of my topic here. Because I openly advocate for marriage equality, women’s rights, sexual freedom, helping the poor, providing care for the sick…but I cannot deny that my overwhelming desire for tolerance is tinged by something darker…prejudice.

Prejudice is an ugly word, most often evoking the concept of racism, but it applies to many different things. I want to be frank about some of the prejudices I hold in an effort to further the conversations we have about tolerance in our modern world. I consider this post “Part 1″ in a series.

Skin Color

Yes, I make snap judgments about people based on their skin color. Sometimes I have visceral reactions based on my first impressions, and they can be entirely unwarranted. I grew up in an entirely white neighborhood. I can count on one hand the number of people of color I knew in elementary school. (One of them was an Indian girl who ended up being one of my closest friends in the sixth grade.) It may take two hands to count how many I knew in high school. But suffice to say, I was surrounded by people who looked like me for my entire childhood.

Diversity - Image from ClipArt.com

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The Joys of Having a Small Bowel Follow Through

This morning, I woke up much earlier than usual so that I would be ready when my mom arrived at 7:30 am to drive me to an appointment down at Albany Memorial Hospital. The name of the wonderful procedure I had done is a small bowel follow through to check out my terminal ileum. The quick explanation of this test goes as follows: you drink some barium and wait for it to move through your digestive tract so the radiologist can take x-rays of your small intestine. But that barely scratches the surface of the experience.

Per the instructions I was given, I did not eat or drink anything after midnight last night. This was very difficult for me, because I usually keep a beverage on my nightstand at bedtime due to the dry mouth I suffer from. Then I got up at an ungodly hour so my mom could battle morning rush hour traffic to get me to the hospital for my 8:15 check-in at patient registration. The procedure was scheduled for 8:30.

Despite my choice of clothing – only fabric, no metal, buttons, or other fasteners – I had to strip down to my underwear, socks, and shoes. I was given two hospital gowns. The first was meant to open in the back, while the second was to wear as a robe to provide some decency. Please take note of how fashionable I was in these gowns.

Double Hospital Gown

I got called in right around 8:30 so a technician could take my preliminary x-ray, lying on my back on the x-ray table. I was then asked to sit up and drink a cup of barium. “It’s unflavored,” I was warned. I opted to use a straw and joked that the reason they don’t let you eat or drink first is so you’re so thirsty you’ll drink anything. I was praised for looking on the bright side. Then I choked down a cup of the vile fluid and was told to lie down on the table again, this time on my stomach. This was my “zero minute” x-ray. Or maybe she said “minute zero.” It was one or the other.

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This is one of the documents my dad left on his computer. The images were added by me to illustrate the text.

The Parable of the Virgins 2

My initial spiritually inspired thoughts and scriptural references to support them

I believe some misconception may be due to a misunderstanding of the word “chasten”

From: http://www.merriam-webster.com/dictionary/chasten
chas·ten transitive verb
: to cause (someone) to feel sad or embarrassed about something that has happened

I believe that too many believe it to mean punish or correct! Is this the interpretation from the Greek?? Even if this is so, God has shown me that this isn’t necessarily His meaning as the reason for permitting every tribulation. We all suffer tribulations unless we are NOT sons, but bastards! His reason is to spur us to seek Him; to provide opportunities to grow stronger in and closer to Him. Without tribulations in our lives many, maybe even most of us wouldn’t even think about seeking God. We would probably only enjoy life and not think about God or others at all. Tribulations give us cause to seek God, and give us the opportunity to grow stronger and closer to Him.

Tribulation misconceptions

There are many Christians, some very strong in some areas of faith, that seem to make judgement about the faith of others due to a lack of wisdom or faith or something else because of lack of complete understanding. They seem to believe that their knowledge, their faith, their understanding must be better. They seem to believe that they have a right to judge those others. After all, this particular tribulation hasn’t been set against them!

Why do I believe these to be in error, to be misconceptions?

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God and Mantle Cell Lymphoma

This is one of the documents my dad left on his computer.

100607 019

chas·ten transitive verb \?ch?-s?n\
: to cause (someone) to feel sad or embarrassed about something that has happened

When I was young, I wasn’t sure about whether I should believe in God. I had gone to Sunday School, but wasn’t sure about confirmation. I wasn’t going to take the classes, but I did. At the end of the classes, I demonstrated a knowledge, and had a desire to believe, but I still wasn’t sure. God allowed me to be confirmed.

Over the years, God provided a number of people, events and situations in my life to guide the development of my faith. Elsewhere?

Miracles to help reinforce my faith. Elsewhere?

Throughout much of my adult life, I trusted God for all of my health, safety and well-being. I rarely went to the doctor. The only time I went to hospitals was to visit others, or for physicals for the fire company to prove suitability for active service. Those, and a hernia repair, were my only personal use of my health benefits. Birth of our children and wellness care for them…

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Dad had kept track of all of his treatment regimens in hopes of helping other Mantle Cell Lymphoma (MCL) patients understand their treatment options. I copy/pasted his documentation faithfully, although adding emphasis and links where appropriate and fixing the formatting. Anything in [brackets] was added by me for potential clarification.

Chemo Regimens for my Mantle Cell Lymphoma

* * * * * * * * * * * * * * * * * * * * *

Pre-Oncology

Week #1 – The following as accurate as possible. Doing it from memory. Look for paperwork for supporting evidence?

09/24/10 – At ~7:25 PM at end of lunch, had something sticking in my throat, feeling like it might choke me. Lasted a couple of minutes. Told Scott in case it happened again and I needed paramedics. Didn’t. Told Debbie about the incident when I got home.

09/25/10 – At ~6:30 AM, it happened again while in bed. Debbie took me to Medicall Urgent Care. Doctor Hermann H.? saw me about 7:00 AM, and had nurse make a 9:00AM appointment for me with Dr. DeVito at Stuyvesant Plaza in Albany that very morning. He told us I had a large [tumor] ? on my right tonsil which needed to be removed. He had surgical time for October 5. 2010 at Samaritan Hospital in Troy ~8:30AM(?). We took it. The operation was only supposed to take about 30 minutes, but ended up taking much longer.

10/05/10 – The operation was only supposed to take about 30 minutes, but ended up taking much longer.

10/??/10 – Follow-up with Dr. Michael DeVito. He told us that I was typed by the Mayo Clinic with Mantle Cell Lymphoma. He offered to have his staff contact an oncologist for us. Suggested NYOH in Latham, but I asked about the Rexford office. They suggested Dr. John DelMonte. We asked them to schedule a consultation for us.

10/??/10 – Initial consultation. Scheduled a CT scan?, PET scan?, echocardiogram? and colonoscopy?

11/15/10 – ?

Nodular Mantle Cell Lymphoma - by Gabriel Caponetti


Regimen #1RCHOP – NYOH Rexford except for the last, which was done at NYOH AMC prior to Regimen #2

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My #SoleStory – Cute Vionic Orthopedic Sandals

Vionic offered me the opportunity to review a pair of their Havana Heel Strap Slides for their #SoleStory campaign. I was thrilled, having already enjoyed the Orthaheel slippers they had sent me to review. I’ve never had a really good pair of sandals before. I’ve worn cheap sandals that looked cute but killed my feet, and I’ve lately been wearing a pair of Dr. Scholl’s sandals that were comfortable but not much to look at. But take a look at these:

SoleStory

For the first time ever, I have cute sandals that actually feel good on my feet. And I really had to put these to the test. I wore my Vionic sandals to the pool. I wore my sandals to the movies. I wore my sandals to the cemetery on Memorial Day so I could photograph the “new section” and document each person laid to rest there for an online memorial site.

I wore my sandals to the hospital to visit my dad after he was taken there by ambulance just a few days after his 63rd birthday. I wore my sandals to the hospital the last time he was able to speak, when he was able to tell me that he loved me. I wore my sandals to the hospital the next night when we brought my son to say goodbye to his grandpa, who wasn’t expected to live through the weekend. I don’t think I wore my sandals a few hours later, though, when the nurse called at 3:00 am and said it was time… and we didn’t make it before he passed.

I wore my sandals to his wake last Tuesday. Standing at the funeral home to accept condolences from people for three hours, my legs were tired and sore by the end of it, but I credit my sandals for protecting my feet and my ankles from additional pain. Standing for any length of time has been very difficult for me for a long time now, but orthopedic footwear has been a godsend. I also wore my sandals to Dad’s funeral last Wednesday, and though it may seem like a small thing, I was later complimented for my composure and my confident posture when I read the eulogy I’d written for him. I’d been terrified of falling apart in front of everyone, but I think I made my dad proud.

Thank you, Vionic, for providing me with these sandals for this review. I wish I had a happier story to share about them, but since I don’t, I am grateful that I was spared one type of physical type when I was in so much pain otherwise.

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Unfinished Letter from My Dad

I have always said that you were my first miraculous answer to prayer. That is not necessarily completely accurate. More precisely, you are my first “recognized” miraculous answer to prayer; and that answer hasn’t totally been completed, but parts of it are still a work in progress. While a few parts haven’t been fulfilled in in way which, on the surface at least, appear to be true, that may only be MY perception. The parts that haven’t seemed to have been fulfilled, may have been, but aren’t necessarily easy for me to know or perceive for certain. Still other parts must be of faith that I will not even have a chance of knowing until both of our earthly journeys have come to and end! But for those for which I am not sure have been fulfilled as I prayed within the first few hours of YOUR journey, I will always have faith that God will answer them as prayed that day. To me, the answers that I have witnessed until now are evidence, no proof, of that. Tribulations must come. These are opportunities for our edification, or sometimes for the edification of others; not necessarily to punish or correct us!

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